Saturday, November 20, 2010
"Come to the edge, He said. They said, We are afraid. Come to the edge, He said. They came. He pushed them... and they flew." ~Apollinaire, Guillaume
Been a really weird kind of day.I don't often have days like these.I have spent the vast majority of it,trying to figure "it" out.Whatever the heck,"it" is.I sometimes have this overpowering,and frustrating to some, need to find reason and logic with most everything. When,in reality,the last few years,if they have taught me anything,is that there is often no reason and certainly no logic in most all that happens.I dissect and over analyze the big life stuff.And sometimes,even the little life stuff.Really a colossal waste of time.I seldom have found the answers to what I am looking for.
Today I have been on the edge.Sad and overwhelmed and then in turn, I am left feeling guilty for feeling sad and overwhelmed.Vicious,ugly circle.
I suppose,if you get right down to it,it started yesterday.At Zoey's Thanksgiving Feast.The anti-social part of me was going to skip the shin-dig altogether.I contemplated not even sending Zoey to school.Kinda of like this past Wednesday.When she had a field trip.To the local Pizza Parlor.To tour the kitchen,make pizza's and then eat the fruits of their labor.Tour the kitchen:What,in her stroller,with a view from 24 inches off the ground?Make pizza's:Yep,one handed,with,more than likely,the ingredients finding their way to the floor not the dough, and in the end,the teacher finishing it and then all of us pretending like she "did" it herself.Kind of like her art projects.I watch from the windows when I drop her off.I see them doing it for her.Their hands on her hands and voila,Zoey's,say,Pilgrim hat,finished.Finally,eat the fruits of their labor:Does that really need an explanation?So instead we went to Target.Much better choice.
Okay, back to the Feast.We went.Really wished we hadn't.Zoey sat at the table set up outside,in her special chair,as not to fall over sideways in a traditional chair.Threw her place mat.Threw her napkin and of course,it almost goes without saying,there was no eating.I joked as I gave her her tube feeds,but honestly,there wasn't anything funny about it.And Zoey,who is usually happy as a clam,at anything that involves people,was SO not happy.I have come to realize that she does not do well,outdoors,in crowds of people.She was the same at the Buddy Walk.Sensory overload.Strange,cuz she loves the grocery store and the afore mentioned Target.The Zoo,Disneyland,over crowded outside venues,not so much.So you know,we hightailed it out of there.I had had enough.And today I am feeling the aftermath.
Now before I go on,I need to preface this with the following:I KNOW how lucky Zoey is.I KNOW how lucky we are.If you know me very well at all, you know that I never take for granted,for one second, that our daughter has fought and found her way through many life threatening obstacles.No one needs to remind me of that.The great number of childrens funeral's I have attended over the last year and half,is reminder enough.The sad faces of my mommy friends who are missing their children,are reminders enough.What I am about to say,in no way diminishes my gratitude.I am grateful.I am blessed and lucky but today,I am also just plain sad.
Today I literally fought,to get a teaspoon of food into my child.A teaspoon.No exaggeration.I fought her again,as I tried to put a cup,a straw,and finally,a syringe of liquid,to to her lips.She cried and then,I cried.I had a child who nursed.I had a child who ate.Chemo and seizure meds put an end to that.Do you know how long we have been fighting this food aversion thing?Like 2 years.Gets old after awhile.
Today I saw my child frustrated beyond words as she tried to convey to me a need.Several needs in fact.What needs you ask?I have no idea.Still haven't figured them out.She threw herself back each time.Grunted and kicked over an over and then she cried.And then I cried too.
Today I tried,over and over and over again to stand my child up and get her to go from point A to point B.Like 15 inches I am talking,to no avail.Her legs buckled,she tried to drop to the floor and after a bit,I let her.
I have come to realize,as I sit and listen to other mom's and dad's talk about their children with Down syndrome,that Zoey's path and our path with her,is drastically different,then most.I seldom have anything to add to conversations of inclusion,reading programs,dance classes,sports teams and yes,even Christmas shopping ideas.And,looking farther out,boyfriends and girlfriends,jobs and living on their own.It becomes abundantly clear,as time passes, that the gap between Zoey and her peers,is getting wider and wider.As I watch them arrive to school on bikes with training wheels,playing with their parents iphones,discussing where they will be having lunch,mastering skills in record speed ... that gap feels like the Grand Canyon sometimes.Zoey will be 4 in 4 months and she doesn't have her pincer grasp for crying out loud.It is not that I do not derive joy in watching and listening to these other beautiful children,because I do,really I do. It is not that I dislike being part of the conversations either,I am just left with absolutely nothing to contribute.I feel like an outsider at times and sometimes,I wonder if even they,feel sorry for me.Just as they dread,that look of pity,from parents of typicals.
I kinda feel like giving up in some moments.
But I won't.I don't have it in me.
So today, after Zoey and I both had a good cry session,I just held her in my arms.She fell fast asleep and I gazed at her,studied all her features,in all their perfection and knew,that,we both will eventually find our way.It is getting there that has proven to be the hardest part.And today,seemed harder than most.